Notables is a monthly e-newsletter to share stories about discoveries and best practices that are opening doors and transforming lives for children and adults with intellectual and developmental disabilities and their families.

Each year undergraduate and graduate students participating in the Kindred Stories of Disability project have conversations with individuals with disabilities and families living across the state of Tennessee. They discuss topics that are important to families and timely and relevant to conversations being held in the Tennessee Legislature and on Capitol Hill.

Planning Hill visits in DC with the Tennessee cohort representing the VKC, TN Council on DD, The Arc TN, and UT Boling Center.

The conversations are crafted into stories, coupled with personal photographs, and are included in a booklet that is printed and shared with legislators and policymakers during Tennessee Disability Day on the Hill and the Disability Policy Seminar in Washington D.C.

In 2018, the stories came from families living in some of Tennessee’s rural counties. Parents spoke of the challenges they face when attempting to find quality services close to home. Many of the families interviewed travel 2 to 4 hours to the nearest cities to see doctors, psychologists, behavior analysts, and occupational therapists. Some families report having to end much-needed services because the travel it requires to access them is too burdensome. Other families are unable to access a service they know their family member needs, such as a dentist or a teacher who has received training or who has experience working with people with disabilities.

While pursuing a Master’s of Education in Special Education at Vanderbilt, Sophie Meskis became involved with Kindred Stories as a trainee for the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities (VKC UCEDD). The project is a way for future professionals to gain exposure to issues that take them beyond their particular academic pursuits and career goals. Meskis helped project coordinators develop a survey for participants to gain a better understanding of what supports and services are missing in the families’ counties, and to learn how far families must travel across this long and narrow state to get what they need.

“From the sample who completed the survey, the most used services, in order, were Dentistry, Speech-Language Therapy, Occupational Therapy, and Specialized Medical Care,” said Meskis. “Of these, some services required long travel. When examined by individual, 80 percent of respondents traveled more than 50 miles for at least one service.

“Conversely, families also reported needing many services that they were currently unable to access at all. Among the most needed services were Respite Care, Parenting Skills Training, Psychological or Mental Health Services, and Behavior Support. For each of these services, a high percentage of the sample was not receiving the service, but over half of that group reported wanting that service. There are noted discrepancies in what people need and what people can access.”

Hill visits included discussions on topics that impact people with disabilities such as inclusive higher education, SNAP, Medicaid, and civil rights.

At the Disability Policy Seminar in April 2018, these stories were shared with U.S. Congressional staff, thanks to self-advocates, parents, siblings, and organizations like the VKC UCEDD, The Arc Tennessee, the Tennessee Council on Developmental Disabilities, and the University of Tennessee Boling Center. Armed with stories and knowledge, the Tennessee team joined with people from around the country to learn from policy experts and then converge on Capitol Hill.

Kindred Stories of Disability is but one of many examples of the ways that the VKC UCEDD engages with public policy to fulfill its mission of promoting independence, self-determination, productivity, integration, and inclusion of individuals with developmental disabilities.

The Kindred project is effective on The Hill because stories have power. They spark listener attention and are immediately memorable for one simple reason–human beings are innately programmed to relate to human beings. This is pivotal because when we relate, we begin to care and to take action.

In her address to Disability Policy Seminar attendees, Senator Maggie Hassan (D-New Hampshire) reminded us how important it is to share our stories.

“Democracy is about shared power,” said Sen. Hassan. “And human beings –“through most of our history”–“haven’t been very good about that. People don’t give away their power, so people have to stand up for their share of power. The thing about a democracy is the work is never done. Keep making your voices heard, keep letting your Senators and Congressmen know about the issues that impact you in your daily lives.”

Tell your stories.

See VKC UCEDD Tennessee Kindred Stories of Disability to read stories or to share your story.

Courtney Taylor is VKC associate director of Communications and Dissemination.

Who We Are

The Vanderbilt Kennedy Center (VKC) works with and for people with disabilities and their family members, service providers and advocates, researchers and policy makers. It is among only a few centers nationwide to include a University Center for Excellence in Developmental Disabilities, a Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Center, a Leadership Education in Neurodevelopmental and Related Disabilities Training Program, and a Treatment and Research Institute for Autism Spectrum Disorder.